I’m not special.

It was a cold wet afternoon when I went to collect the children from school yesterday.

Mr Patient was away on business so we weren’t under any time constraints so I asked them each how they felt about the idea of going to the chocolate shop for fondue and hot chocolates to warm up a bit. They all jumped at the idea and I was confident that Harley would be ok with this kind of surprise. He’s been there before, he had prior warning and he knew exactly what he’d be eating.

We arrived and giggled as we ran through the rain together. The cafe was mostly deserted and so we headed to a booth in the corner and gave the waitress our order.

Everything was going wonderfully and I patted myself on the back for pulling off such a risky move. The hot chocolates arrived followed by a platter of sliced up strawberries, bananas, marshmallows, tiny pancakes and wafer biscuits to dip into the chocolate. I reminded Harley that he could have most of the banana and strawberries but nothing else because the other things contained gluten. He nodded and the other kids were all ok with that and so the dipping began.

But then, gradually ‘the signs’ started to appear. He deliberately pushed his mug across the table spilling some of the contents. He quietly started head-butting the arm of the sofa we sat on. Then the kicking of the table leg started, then the quiet growling, followed by hand chewing and I knew we had to get out of there ASAP, so I paid the bill and quickly took him away from prying eyes.  We walked over to the other side of the centre near the supermarket down a quiet alley and he leaned on me so hard that I kept losing my balance. He was flapping furiously and getting more and more upset. I tried to walk him to the car but he wasn’t having a bar of it.

So we sat down on the floor and waited.

And waited…..

And waited.

He was reaching a climax and started screaming at the top of his lungs and was starting to attract attention so I tried to pick him up and carry him but he went limp making this impossible.  I handed Ella my purse and asked her to go into the supermarket and grab the bread and milk that we needed and sat down on the floor next to Harley stroking his head. Eventually he was calm enough to carry so we headed for the car. He snuggled into my shoulder as he finally gave in and I could feel him relaxing a little. He was spent.

We pulled out of the car park and headed towards home with me chastising myself for being so stupid as to even suggest an outing in the first place. I KNOW that this is often the case but I so badly wanted to spend some “fun” time with the kids and I honestly believed that they’d enjoy it.

I started wondering if the trigger was the fact that he was only allowed fruit with his fondue so I asked him. “No, I don’t care about that” he replied.

And then it occurred that maybe running through the rain upset him but no, it wasn’t that either. I threw several other possible scenarios out there trying desperately to work out what exactly went wrong so I could learn from it and avoid it next time but I was running out of ideas quickly.

But then a little voice from the backseat piped up saying :

 ”I am NOT special”.

“Of course you are honey” I replied ”You’re very special, I love you to the moon and back, you know that!”

“Stop telling me that I’m special. I HATE it”  Came the terse reply.

I knew I had to dig a little deeper but I waited until we got home again before bringing it up again.

We had dinner, I bathed the boys and turned on the TV for Lucas. I went into the bedroom and sat down beside Harley hoping to finish our conversation from earlier on.

I pulled him onto my knee and started to rub his shoulders. He relaxed so I started speaking:

“Honey, You know how you told Mummy earlier that you’re not special” He tensed up ”Yes” he said with an eye roll.

“Well, Mummy was sad to hear that, do you want to tell me why you think that?”  

“Because I’m not a freak you know” he answered.

“Nobody thinks that mate, what made you say that?”

“Because EVERYBODY keeps telling me that I’m special but what they really mean is that I’m different. Weird and different and I hate being different. I want to be like everyone else”. 

“But I don’t think you’re weird. I think you’re amazing. I think you’re smart, and kind and generous and…”

“Special” He answered for me.

“No, I wasn’t going to say special but yes. You are special to me. You’re my boy, my treasure, my precious son” I countered.

“Well then, call me precious but NOT special. Special means dumb and makes me feel like an alien” He spat out.

“Everyone at school tells me I’m ‘special’ “ he says making the quotation marks in the air with his fingers. ”Every time I have to eat a gluten-free cupcake, every time I need to go to another classroom, every time I need something explained more people call me ‘special’ and I really hate it”.

I was shocked but enlightened. So I spoke to my friend Lisa about this on a Skype call not long after and she opened it up further for me to understand. (For those that don’t know – Lisa is an adult with aspergers and has opened a doorway to amazing insight that I would have never had access to before meeting her ) She told me to think of “special-ed”, “special needs”, “special olympics” “special services” and I started to understand. I could now see that the use of this word was almost insulting to those high enough on the spectrum to understand the connotations that are unintentionally connected to it. It isn’t intended to be nasty, but it does tie together all the thoughts and emotions that Harley is experiencing at the moment as he realises that he is wired differently.

And obviously Harley has reached an age where he is conscious of his differences and dislikes being singled out for them. He voiced to me that he just wants to be like everyone else but what I ‘think’ he means it that he doesn’t want to stand out as ‘different’.

So my task now is to try to find another way to build him up and encourage him without making him feel like a weirdo.

I still consider myself to be a “special needs Mum” because, well…I am! But I will be careful to not add to my boy’s sadness from now on.

Anyone got any great advice?

Wordless Wednesday 23rd May 2012…..Pick the aspies :)

I know this an old photo but it always make me giggle.

It’s not hard to tell who are easily distracted in our family is it?

In case you “mist” it….

No, I didn’t make a grammatical error in the title. It was deliberate

…

We were driving home from school this afternoon and for once my boys were actually NOT screaming at each other (which is somewhat of a miracle in itself) and I overheard Lucas asking Harley what the word ‘missed’ means.

OK. So this may not be interesting to a lot of you, but for me it brought a huge smile to my face and a big burst of pride as progress usually does, so stay with me…..

Harley (like a lot of children on the spectrum) really struggles with the comprehension side of reading. But recent research shows that sometimes, it’s more a case of the child being unable to actually articulate what they’ve comprehended rather than not actually understanding what they’ve read.

An excerpt from HERE says:

…many students with autism do understand what they read, but cannot effectively express what they know. That is, some learners only appear incapable of comprehending text. Because students with autism have movement and communication differences, they may struggle to answer questions and express ideas in conventional ways. Some students might be unable to “find” the words needed to answer comprehension questions (or any question for that matter). Others may know the words but be unable to answer questions when directly asked to do so…

Pretty cool huh!?

So anyway…..Lucas asked what ‘missed’ means and Harley answered him in a very informative matter-of-a-fact way like this: (written as closely to how I remember it as possible).

HARLEY: “Actually, ‘missed’ means three different things. Like that you were late for something (like maybe missed a meeting) or that you wish someone was with you when they’re not. Then you’ve missed them. And then there is the word ‘mist’ which is spelt (sic) differently and it is that stuff that forms on petals on flowers after it rains”.

Today’s lesson: Don’t ever doubt these kids – they will continue to amaze you.

Don’t ever give up on them – they will bless you in ways you could never imagine and don’t ever ever EVER catch yourself saying “ never”.

Imperfectly perfect.

We had been out all day sight – seeing and had come back to the hotel briefly to shower and change ready for dinner. As I kicked off my shoes I noticed a red light that was flashing on the phone on the bedside table. I looked over and saw that Paul had noticed it too. We locked eyes and I noticed the tears forming in his eyes to match the ones forming in my own.

We both knew exactly what it meant but neither of us moved for almost ten minutes. We sat side by side on the corner of the bed holding hands and wiping our own tears away in total silence. We stared at each other, each of us willing the other to walk over to the phone and find out for sure.

We were hoping and praying that it was just a simple benign message from one of the tours that we had planned and not the call that we had been dreading but Paul eventually picked up the handset and punched in the numbers. I saw his face pale at the same time that I heard my Mum’s voice gently saying: “I’m sorry to have to spoil your trip but he’s gone”.

My Dad had passed away during the night and she had been unable to contact us to let us know so left a message instead. I was gutted and wracked with guilt.

Eventually we managed to clean ourselves up and made our way down to dinner where we quietly mingled with our tour group who were unaware of how much our world had just been turned on it’s head.

It was Saturday the 24th February 2008 and Paul and I were on a business retreat in Queenstown New Zealand through his work along with other co-workers and their wives.

Paul was the one who had planned the whole trip and organised all the activities – he was needed and we decided that we would keep our news to ourselves so as to not ruin everyone else’s holiday. We only had 2 days left and Mum told us to stay on because the funeral would take that long to plan anyway.

I barely slept a wink that night. I tossed and turned and my brain just would not stop. I worried about how I was going to tell the children. They adored their Granddad and Harley often asked if Granddad was over his cancer yet as though it were a common cold. Harley was 3 and not yet diagnosed and Lucas was still a baby. We made the decision not to tell Paul’s Mum who was staying with the children back home in Australia because somehow we instinctively knew that Harley was so sensitive to even the most subtle of changes in his caregivers.

I worried that the children would somehow blame me for abandoning them and I knew that I’d have to be extremely careful in how I chose to broach the subject with them once I returned home again. I remember looking over at Paul as he slept soundly and envied his restful state. I’d spent most of the night churning over all the different possible scenarios in my head trying desperately to figure out which direction to head in.

I opted not to go down to breakfast with the rest of the group the next morning, but told Paul that I needed to go for a walk to clear my head. It was a cool morning and I decided that the fresh brisk air would do me the world of good. I rugged up and stepped outside.

Image via google maps

As I walked along I heard a guitar strumming softly in the distance and as I turned a corner I noticed a lady sitting on some stairs humming quietly along to her guitar and I was intrigued.

She looked up at me and smiled and it was then that I noticed that she was sitting in the doorway of one of the most beautiful and quaint old churches that I’ve ever seen.  It was perfectly nestled into the streetscape and surrounded by gorgeous rolling snow-covered hills and I immediately felt an overwhelming peace and comfort wash over me . At that moment, I had perfect clarity of mind for the first time since receiving that call. A lady who introduced herself as Janet came and took me gently by the arm ushering me inside the building and placed a warm mug of tea in one of my hands and a freshly baked scone in the other. She sat me down and introduced me to a small gathering of people who were from England, Scotland and another Australian.

I soon found out that this church was not like any other church that I had ever been in but was more of a ministry to backpackers and travelers and the like. It was a café setting and an outreach to people who were hurting, lost and troubled.

I must have looked like a hobo wandering the streets at a ridiculous hour of the morning in a too big parka that belonged to my husband and dirty denim jeans and sneakers. But I’m sure that I fitted their usual clientele stereotype perfectly!

I was welcomed in, nurtured and somehow these people knew exactly what it was that I needed. I was hugged, listened to and valued and I hadn’t told a single person that I’d lost my Dad only hours earlier.

I stayed a while chatting and sipping my tea until gradually we all started to leave one by one. As I got up to leave myself, I was hugged by several people and was handed a bible (which I still have) with an inscription inside the front cover that reads: ‘Blessings from Vineyard Queenstown, be blessed in Christ’s name’.

Every time I look at this bible now, I am reminded of how God reached out to me in one of my most painful moments. It is a constant reminder that He will always provide me with just what I need exactly when I need it. This tiny little non-denominational and non-confrontational welcoming church serves as a constant memory of God’s grace and mercy and is a promise that He will always equip me to deal with the children that he has blessed me with.

He gives me the grace I need to face challenges that my human mind is baffled by. He provides a way out when things look hopeless and He promises that He will never leave or forsake me regardless of how ridiculous life’s circumstances may appear at the time. I don’t believe that this amazing experience was just merely a co-incidence. I truly believe that God met me in my darkest hour and that He provided just what I needed at that time. This chance encounter was all in HIS perfect timing. I was meant to walk past that church that February morning just as I was meant to be blessed with my amazing though challenging children.

Everything is in His perfect plan whether I understand it or not.

Little did I realise at the time that losing my Dad would be the beginning of a very long chain of events that have all helped to shape me into the kind of mother that my children need.

Imperfect by the world’s standards but perfect for what God has in His master plan.

How To Talk To An Aspie.

People often tell me that Ella is such a great girl/sister/daughter, or that Lucas makes them smile/laugh/giggle. And it makes me happy as a mother to hear feedback like this, but it also makes me really sad on another level.

Because; I rarely get reports like this about my precious little Harley.

And occasionally, I permit myself to think about the possible reasons for this and become sick to the stomach as I consider the possibility that I did this by blogging about him.

Have I used this platform to paint an unfair and inaccurate picture of him? Have I magnified the not-so-pleasant parts of autism therefore causing him to be branded as a troubled child?

Well. No. I don’t believe so.

I spoke to my Mum about this and she pointed out that she has read every single post I have ever written and assured me that the major theme that shines through them all is total compassion and unconditional love for my sweet boy. And I believed her because I KNOW that I never once have tried to vilify him in any way.

Harley is a challenge yes – but he is not a bad or naughty child. But sadly, there have only ever been a handful of people in our lives that have bothered to get to know the beautiful loveable little Harley that lurks beneath the aggression and aloofness. A lot of people simply refuse to look past the often sulky, highly anxious and sullen faced boy that he so often presents to the world.

But I’m here to say that he is special, he is a joy and a remarkable example of God’s grace and perfect workmanship.

It occurred to me a couple of days ago when talking about all of this to a friend, that this is more than likely a case of other people not knowing HOW to talk to him or respond to the sometimes awkward interactions with him. It’s highly probable that a lot of friends are unsure of what to say or how to say it and are afraid of causing offense so opt to play it safe by saying nothing instead.

And hey…..I totally get that!

But Harley is extremely intuitive even without being skilled at reading body language or facial expressions. He knows instantly when someone is uncomfortable around him and he responds accordingly.

So I thought it might be interesting and possibly helpful to write-up a short list of do’s and don’ts when interacting with MY aspie.

And my disclaimer up front is that I don’t profess to know all there is about aspergers or how each individual differs, but I can give an insight into MY aspie that no other could, so bearing that in mind….each point will be written ONLY about Harley but a lot of them are transferable to other children on the spectrum as well.

So here goes, I’ll try to keep it short

DO

• Acknowledge Harley by using his name when greeting him. Sometimes – particularly if you’re in a crowded environment or noisy area – he will be overwhelmed and not listening when you speak. Hearing his name will alert him that you are talking to him.

• Repeat the greeting if necessary. He possibly didn’t hear you.

DON’T

• Take it personally if he grunts/groans/scowls or snaps at you. It’s more likely that he is overloaded sensory-wise than being oppositional.

• If he refuses to answer – don’t push him. It may seem that he’s being rude, but I’ve learned that this is not because he doesn’t like you. There may be a thousand reasons that often even I am unable to figure out.

DO

• Speak to him like you would any other child. He is at an age now where he detects if you’re talking down to him.

DON’T

• Expect him to eye contact you. He is unable to speak and maintain eye contact at the same time, Just because he isn’t looking at you doesn’t mean he isn’t listening.

DO

• Find out about Harley’s special interests and weave them into conversations with him.  This is how my Mum and now another close friend have gotten into Harley’s world. Sonic the Hedgehog opens up a part of my boy that nothing else can.

DON’T

• Tell him that he’s a big boy now and shouldn’t be playing with Sonic/Teddy bears/My Little Ponies/Toy Story or Cars paraphernalia. Children on the spectrum often have an ongoing and lasting interest in toys or gimmicks that aren’t what society (or toy companies) deem to be age-appropriate.

DO

• Show an interest in what he is talking to you about however mundane it may seem to you at the time.

DON’T

• Finish sentences for him even if it’s obvious where he is going with it. This frustrates him and makes him lose his train of thought and he gets quite anxious. He needs to get sentences out fully before he can move onto the next thought.

DO

• Follow my lead.  I have learned how to read his vital signs most of the time and I always try to cater to what I’ve sensed in him.   If I say something along the lines of: “I’m so sorry but we really have to leave NOW”, listen and respect that. Please don’t try to illicit conversation from him or tell me that “he’s fine”.

DON’T

• Think that I’m shunning or avoiding you. I am just trying to save my son some dignity and remove him from situations before he loses control and possibly embarrasses himself.

And I have like a thousand more to add but right now, I’m going to turn it over to you my loyal readers: What would you like to add to the list and I’ll try to include them all in  ”How to talk to an Aspie Pt 2″  :)

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The best things in life really ARE free.

Today was a good day  It didn’t start off so well though. We had both of the boys awake at various times during the night and then awake for the day at 5:30 am. Which wouldn’t be so bad except the fact that they don’t know how to “play quietly”.

There was yelling (us) crying (them), banging of toys, light saber sound effects (made by their mouths) and fighting over the Wii. (Which isn’t even supposed to be turned on until after lunch). So tiredly, Mr Patient and I resigned ourselves to the fact that a sleep-in just wasn’t going to happen and wearily started preparing for the day.

We had breakfast and told the boys our plans which consisted of pretty much everything that they hate to do: shopping, eating out and walking around , and the hissy fits that followed were just as we’d predicted

Mr Patient has his birthday on Monday and it’s mother’s day tomorrow so we had a few things we still needed to get so we decided to all go shopping together.

As a family.

We knew they’d hate it and sure, we could have done it in shifts so that the boys didn’t have to leave the house at all, but sometimes I dig my heels in and stubbornly tell them to suck it up and deal with it. There are times like today when we decide that they will never learn appropriate public behaviour if they’re always sheltered from it so we ignored the tantrums and we all piled in the car. I admit that there were a couple of times during the short drive there that I wondered what the hell I was thinking, but stood firm to my resolve.

After we’d arrived, we knew that feeding them something was our absolute first priority as everyone is calmer on a full stomach, and this Mumma needed coffee….so we found a table in the food court and got comfortable.

I glanced over at Harley several times during lunch, partly because I wanted to remain one step ahead of him in case he started to go downhill, and partly because I was in absolute disbelief at the calm and happy child that sat beside me!?

This is not how it usually goes for us. We rarely eat out without tears, meltdowns and headaches.

And then it dawned on me! I worked out why he was so settled.

Where we were sitting WAS quiet and it was calm. The corner booth that we had chosen was sheltered from the rest of the food court. There was a dividing wall between where we sat and the noise and crowds on the other side. And because Harley was sitting directly beside the wall, he was getting even LESS crowd noise than the rest of us and all he could see was us.

We had unintentionally found the perfect aspie seating area and Harley actually felt less threatened and a lot calmer. We enjoyed our meals and we happily chatted together as families SHOULD.

I know that this only seems like a small deal to some people…but I can tell you that for us this is HUGE!!!! It really is the little things. The little things all add up and I’m learning that if I sit back and take notice of these little things more often…..life won’t seem so overwhelmingly difficult.

Look at the joy on Harley’s face as we bond as a family.

For me – you can’t put a price tag on that

Pure joy.

Look at those nasty crowds BEHIND the wall

Climbing out of the trench.

As regular readers will know: I have two children diagnosed with Aspergers Syndrome. And I’ve written many times that they are polar opposites in how they present. I have read a lot of blogs that say that parents like me are being unfair to the autistic community by presenting the negative side of autism.

But this my friends is sometimes the autism that we live with.

And I know that it’s not everybody else’s autism but this is our story.

Some parents may have a “Lucas” type of aspie in which case – they may see this as an unfair portrayal, but I also have a “Harley” and other parents of Harley’s will know where I’m coming from.

I’ve asked the question before: What Kind Do You Have? because I know from personal experience that extreme anxiety, aggression, anger and explosive behaviour are not always present in every child on the spectrum. But it is VERY present in one of mine and not in the other.

So…..

Everybody knows that once a month, most men walk on egg-shells around their wives, girlfriends or teenaged daughters right? Right?

I don’t need to go into specifics, but you all know what I mean when I say that some words or actions are just triggers that could potentially cause a major explosion. And most of you reading this are in fact one of these women that need to be given a wide berth every four weeks or so.

Well, this is a really ideal way of explaining what life is like when you have a child with high anxiety and aggression issues related to their particular brand of autism.

But the similarities end here because, this doesn’t just occur monthly. And its not able to be predicted with a calendar. This is far more constant than that and often far more volatile too. The end is not in sight and there is no 3 weeks “normal” period in between.

Now don’t get me wrong; I absolutely love my boy to bits but honestly, sometimes, it feels  like we are living with a bunch of moody teenage girls who are all cycling one after the other. There is no reprieve.

And other times it’s like we reside in a constant combat zone and the associated stress levels are constantly at an all time high in this household.

It’s why I believe that like a lot of parents of children on the spectrum feel like they live in the middle of a war zone. Like they have been thrust onto the front line and why they long for someone or something to pull them out of the metaphorical trench.
Because there really is NO break at all.

Anyone can avoid particular subjects or people for a short time but when you’re in it 24/7: there aren’t any down times.

I was sitting down having a deep and serious conversation with Mr Patient recently and we were trying to figure out why we seem to be always teetering on the verge of complete mental meltdown ourselves, and why the simplest things seem to set us off so much more than they really should.

We wondered aloud why we become so unsettled and angry by little things that other parents are seemingly unaffected by.

Because, the thing is; we know that not all behavioural related childhood traits are autism specific. We are aware that all kids have moments of defiance and pushing their boundaries but we’ve also noticed that other parents don’t seem to be pulling their hair out in utter frustration over the little things as often as we do. They seem to be able to shake it off a lot more easily.

And we figured that it’s got a lot to do with their stress ratings.

Let me explain:  Between us, we came up with the stress-o-meter as a way to help each other understand exactly where we are at. I’m sure that this is an age old technique that has some fancy psychology term, but we are simple folk and have found that this is what works for us.

Think of a long straight line. At one end of this line is a 5 and at the other is a zero and the goal is to stay aware of where we are sitting on that line at all times.

So, level 0-1 is ideally where we’d all like to remain but life often throws curve balls and many of us find ourselves reaching 3′s, 4′s and sometimes a 5.

Everyone has stress and everyone varies at their level on this meter but honestly-for us, it feels like we hover somewhere between 4 and 5 at all times. We admitted that we rarely if ever get down to a 2 and almost never on level  1.

And prolonged exposure  to stress often affects your ability to move lower on the line. I see it in my own Mum when she comes to stay. She arrives on a healthy zero and goes home somewhere between a 3 and 4 herself. By the end of her visit she is often asking things like; “Is it bedtime for them yet”?

And this makes me feel a whole lot better. Because it means that we are not the only ones who find it tough going here.

And I think that it’s got a LOT to do with how much time you spend dwelling in the trench and how much time you allow yourself or are permitted to climb out.

But here’s the thing. Climbing out is not always as easy as you would think.

Some days we really believe that we deserve to be in that trench. We become big  martyrs and tell ourselves that we aren’t doing everything possible for our children if we aren’t thinking about ways to help them 24/7.

We wrongly tell ourselves that any times spent doing anything non-autism related is time wasted that should have been spent on helping our child to better navigate this big bad world.

It’s like mother guilt only a hundred times more.

But this is not the only reason that some of us dwell in the trenches.

Sometimes, (and I can attest to this scenario a lot more than the former one),  we honestly have no idea how on earth we are going to get out of the damn trench because it’s all we know.

We become familiar with it and we start to carve out our own little niche. We tell ourselves that as long as we need to be there, we may as well make ourselves comfortable, and we gradually find ourselves slipping further and further down into the mire of that trench.

And the sound of gunfire rings louder as our stress levels rise with every coming day.

Because we haven’t seen sunlight for sometimes months, we start to become irritated by the smaller things that we would likely be able to block out or deal with if we knew it’s only going to be temporary.

But we know it’s not. We can’t see the end in sight. We can only see the (assumed) many years of heartache ahead of us. We’ve lost sight of the bigger picture.

We know that often there’s nothing to look forward to and that it’s difficult to take your eyes off the here and now and look beyond to the treasures that potentially lay ahead.

And some of us need a helping hand to pull them out of the trench. Like I did and still do.

If you’ve read this blog for a while you will have read that I myself have been diagnosed with clinical depression and am currently medicated to manage it. I have good days and my bad days and EVERYTHING in between!

I am one of those people who struggles to see the silver linings and can very easily sink because I simply forget how to swim. I often think that it’s impossible to climb out of the trench and I become overwhelmed and exhausted so much quicker than I really should.

But God knows this and has placed people around me who are able to help keep me afloat and help to pull me up when I find myself sinking into the pit again.

God is the one treading water whilst he hold my head above the crashing waves.

I still have that wretched self talk telling me that I don’t deserve it whenever I’m offered a break and I am overcome with emotion when someone does reach out, but I’m definitely getting MUCH better at this!

I have recently started walking with a close friend. Because sunshine boosts your vitamin D and sunshine also dries the mud in the trenches.

Laughter and friendship and being able to escape the war zone even once a week is incredibly important so I have promised myself that the self-talk is going to change.

I may not be honestly able to get down to a zero or 1 on that stress-o-meter whilst I have very young children…..but if I can get down to a 2 or 3,  I will get that much-needed reprieve.

I AM worthy, I AM capable and I will believe what God says about me NOT what my exhausted, tired and emotionally drained brain tells me to believe.

I’m allowing people to pull me out of the trench or inviting God to sit down in it with me and comfort me until I have the energy to climb out. Or let him give me a leg up

Either way….I KNOW I’m never alone.
Have a great weekend friends xx

What I’ve learned these past few years.

Sometimes, no matter how hard you try or how much work you put in, there are going to be days that are harder than others.

That is the nature of autism.

It’s neither good nor bad. It is what it is.

And when you love someone with autism, you will keep putting one foot in front of the other until the hard times pass because the joy that is at the end is indescribable – the rewards are priceless.

And that my friends; makes all the harder times worthwhile.

What has autism taught you?

I am the mother take 2

It’s time for another “I am the Mother” post.  I still smile as I read the ** Original Version ** that I wrote because a lot has changed since then

These days:

• I am the mother who is fluent in sarcasm but knows that she shouldn’t use it as often as she does.  Especially on her children who don’t understand it.

• I am the mother  who sometimes buys treats and hides them in the house because she is tired of sharing everything else that she owns and wants just one thing for and ONLY her.

• I am the mother who owns 2 diaries and a calendar in the attempt to become more organised but has misplaced them all  :/

• I am the mother with the short attention span who often really struggles to focus due to her constant sleep deprived state.

• I am the mother who really wishes she could toughen up a bit and not get so hurt by other people’s words.

• I am the mother who definitely thinks that exercise is overrated. Come and live in this house and try to be idle with my kids around. Not possible.

• I am the mother who wishes that she didn’t comfort eat so often.

• I am the mother who would rather be accused of talking too much then be the kind of person that you need to draaaaaaaaaaag a conversation out of. This is who she is. Like it or leave

• I am the mother who really wishes that school went until 5pm and that homework didn’t exist. She is exhausted from spending twenty minutes just trying to get her son to sit at the table and another 20 minutes convincing him to pick up the pencil!

• I am the mother who secretly loves watching pre-school tv shows and misses them now that her baby has started school

• I am the mother who still cries at least once a week because she misses her Dad even though we lost him over 4 years ago.

• I am the mother who is unable to eat just one grape. The grapes HAVE to be eaten in pairs. One on each side of the mouth. (Hmmm, wonder where Harley gets his quirks from?)

• I am the mother who gets cranky when she’s not taken seriously. I may not have a fancy degree but I know my children better than anybody else on this earth and that should account for something…

• I  am the mother that rearranges other people’s cutlery drawers when she visits their homes. It must go in the same order that they are laid on the table : Fork, Spoon, Knife. She doesn’t cope if they are different  And incidentally,  I am the mother who didn’t develop OCD tendencies until she was thrust in the world that is ASD and the stress that goes along with it!

** image credit

However:

• I am also the wife who deliberately stacks the dishwasher incorrectly because she thinks it’s funny to see it un-nerve her husband, and the wife who likes to rearrange his Star Wars Lego for the same reason

• I am the mother who gets to witness MANY achievements and successes in her children’s lives and is finds joy in the smaller things because for us they are HUGE!

• I am the mother who is convinced that her children will go higher and grow stronger than a lot of people give them credit for due to the handful of people that DO believe in them and their go-get- ‘em attitudes.

• I am the mother who is thankful that God is daily giving her more and more insight into their little worlds so that she can understand them just that little bit more.

• I am the mother who would some days like to hang up her hat and resign. Or at least have a couple of weeks paid leave. Several times a year.The mother who didn’t read the fine print before putting her hand up and volunteering to do this job BUT the mother who doesn’t walk away from somethings that she’s started until she sees it to completion.

I am feisty, I am compassionate and I am a fighter.

My children will not fly under any radars and they will not go through life feeling like failures.

What kind of mother are you?

I remember…..

This was taken a few weeks after we received Harley's diagnosis. The same age as my reader's child.

I often get emails from strangers who have read my blog and just want to connect by telling me their story. They write and tell me how autism affects their lives and often the parallels between something I’ve written and what they are experiencing in their own worlds is fascinating.

I love receiving emails because it motivates me to keep writing and to keep spreading awareness one reader at a time.

I opened my email a couple of days ago and there was a new message from a brand new reader who had stumbled onto my blog during one of those (I assume) frantic 3am google searches.

They wrote about their child who has only been diagnosed as recently as 2 months ago. They don’t have any support networks as of yet and are not in contact with any other families that are walking a similar path to them. They feel isolated and frightened.

So naturally I sent them the link to Welcome To The Club written by the amazing Jess over at Diary Of A Mom. Because EVERY new parent should be handed that letter along with their child’s diagnosis. It is vital reading.

But do me a favour?….Finish reading this post before you click over there because once you’ve read Jess….you won’t want to come back

The parent who emailed me desperately wanted to know that there is a light at the end of the proverbial tunnel. They were anxious to find out when and if their child will grow out of this overwhelmingly exhausting stage and wanted reassurance that it will all be ok.  And to be completely truthful – I was unsure how to answer this at first.

I didn’t want to lie and tell them that the meltdowns, tantrums and sensory issues would just magically disappear one day and that life would become all honky dory all of a sudden. And I didn’t want to give them any false hope by telling them that they can expect their child to become “typical” overnight, but I wanted to assure them that what they are experiencing is a normal part of the early days of discovering that you have a child on the autistic spectrum.

I wrote of the feelings of loneliness, of grief and of self-doubt and I told them that I truly understood. I recognised the fear, the anxiety and the emotional overload that was evident in their email and I was forced to go back in my memory to when Harley was first diagnosed at exactly the same age that their child is now.

I remembered the meltdowns that seemed to go forever. I recorded some of them on my mobile phone so I could show it to the paediatrician because it felt like NO-ONE would believe that there was something “odd” about my child. He watched them and nodded knowingly and told me that I would eventually find a way to manage them.

I didn’t believe him.

I remembered the punch in the guts when this very same Doctor told us that our child was “different” and that we would need to adapt as he handed us a list of therapists, specialists and blood tests request forms. I remembered the desperate feeling of abandonment, and feeling overwhelmed and exhausted all at once.

And I remembering thinking that we’d never make it.

But you know what? Through forcing myself to go back and deliberately remember those early days – I was able to see for the first time just HOW FAR WE HAVE COME!

And it got me all excited!

I remembered these feelings and thoughts, but was able to recognise that we don’t live there permanently anymore. We visit them occasionally and we will always be tied to them in some way, but we have moved on to become stronger, wiser and a lot more street smart.

And so YES, I was able to see that there IS a light at the end of that darn tunnel. YES, it WILL get easier, but sometimes it’s probably more likely a case of our challenges seeming more manageable because we now have experience and adaptability on our side.

Back in those early days, we weren’t as capable of predicting possible outcomes in the same way that we can now. We now know precisely what Harley’s triggers are and we either avoid them completely or find other ways around them to make them work for us. We have developed a “tool kit” that is custom designed for him and we rarely go out unprepared these days.

We’ve altered our expectations and have finally realised that sometimes it just isn’t worth pushing stubborn elephants up hill anymore.

And because of this I would say: YES. There is hope. There is HOPE and you will be ok.  My heart breaks for the pain they are in but I KNOW that they WILL be ok.

Because love conquers all and they have more than enough of that for their child or they would never have cared enough to write.

Where do I go from here?

When you read today’s post – please keep in mind that I’m not looking for sympathy. I am working through this in my own way by writing it out. I am not angry, or depressed or complaining, but I have found myself to be at a bit of an impasse and not knowing which direction to head in.

I  love my kids and am fiercely protective of them but on occasion…..there are parts of their brands of autism that drive me stinking crazy. Hence this post.

Cyber hugs will be gratefully accepted as will heartfelt advice but criticism will not be published.

Ok. Ground rules laid out, let’s begin.

Most of you know that both of my boys are diagnosed on the autistic spectrum, and most of the time I’m ok with that. But if I’m being completely truthful with myself, I can admit that a lot of the time I also feel quite ripped off.

And there’s another emotion circling overhead that looks a lot like jealousy or anger but I’m refusing to admit that either of them are possibilities. So for now they will remain known as ‘the unknown factors’.

OK  ;)

And it’s not so much that I’m ‘jealous’ of the normal families that I seem to see everywhere – because I’ve mostly dealt with the fact that this is our life and that it’s ok to be different, but surprisingly I’m MORE ‘jealous’ of those families that only have one child with autism.

I’m ‘jealous’ of the fact that they can focus on that child’s needs alone and of the lengths that they are able to go to, to ensure that their child’s needs are mostly met.

I read stories about new techniques that they’ve learned and methods that parents have implemented and wish that there were some way that I could make them work for us. But I know that I can’t put one child’s needs on a higher priority than the other and I know that I am not able to always to meet both of their needs at the same time.

Sure, I join these parents in rejoicing when their child makes progress or learns something new but there’s a part of me that inwardly cries out: “My child could possibly learn that too if he were the only one I had to put the extra time and effort into”.

Because let’s face it. There’s no doubt that raising children is hard work full stop.

And raising multiple kids kicks it up a level. But raising children with a special need kicks the difficulty factor up a helluva lot of notches.

So trying to foresee and plan for 2 kids with completely opposite high needs – is nothing short of bloody ridiculous.

Most afternoons in the car on the way home from school – there is screaming and/or crying.  And most of these episodes can be attributed to the two boys driving each other stark raving MAD! The problems arise because they are both needing to escape from their brain overloads but because their sensory profiles and emotional needs are polar opposites – they do what calms them in completely different ways.

Harley goes into a trance like state where he shuts down and sits quietly with his arms wrapped up around his bended legs. He finds comfort from gently rocking back and forth and gazing out the window. I have learned not to ask him about his day or try to converse with him until he has had his down time and I know he will come to me when (and if) he’s ready to talk later on.

And this would be great if he were able to do this in peace each afternoon. Ella and I would gladly leave him be until he was ready for company. If he could spend the car trip home defragging from his day – I’m sure that our entire afternoons would be a helluva lot smoother.

But our problem is that Lucas also needs to defrag as well. But he gets his release from vocal stimming. He hums, makes throaty repetitive noises and flicks his fingers over and over again. He talks non-stop in boring monologues and pointless rhetoric.

And as you can imagine…..all of these…drive….Harley…..CRAZY!

So then the tears begin.

The tears quickly turn to moans, then to thrashing in his seat and eventually he screams at Lucas with his hands over his ears begging him to stop making those noises.

So what should I do?

Whose “need” is more important?

Who do I tell to change ?

Do I try to stop Lucas from making noises (that really are quite harmless) for Harley’s benefit?

Or do I try to teach Harley to ignore it and give him headphones to wear instead. (Which I have done many times).

But then, there’s the part of me that wonders if I should be doing a better parenting job. I wonder if I should be using situations like this to teach them both a thing or two about life. Should I use the moment to teach Harley that there will be many times during his life where things  will annoy, frustrate and irritate him but that he needs to learn to suck it up occasionally. Or should Lucas be taught that his noises are irritating to other people and that he needs to control himself better and point out that people in the real world will tell him to shut up if he continues that into adulthood.

Well I suppose the time will come that both of these issues will need to be addressed, but then while my own brain is processing these thoughts, my mother heart takes over and tells me that it’s my job and responsibility to provide what they BOTH need and give them the grace to wind down from a busy day in their own individual ways.

And then the guilt begins.

Eventually my head starts to hurt and I react like I did today: Today it all got too much for me, so I pulled the car over on the side of the road, turned off the ignition and climbed out of the car for ten minutes to let them fight it out alone. I stood beside the car with my back turned to them just taking deep breaths and I counted to 100.

I totally bailed on them both.

And I did it because I simply didn’t know which child to help. I couldn’t prioritise either of their needs and problems and I couldn’t work out which decision to make. All I knew was that I needed to get as far away as possible from the chaos that was unravelling right before me and that I needed to escape immediately.

Anyone that has ever tried concentrating in traffic whilst children scream, throw things and kick the back of your seat will know that in situations like this, escape is not only highly desirable but also entirely necessary.

I did what I had to do to prevent me from having a car accident. And I would do it again in a heartbeat.

I’m still left wondering: How the hell do I fix this?

And why doesn’t anything seem to work?

I’m sure that both of them would be AOK if they didn’t have each other. If I only had Harley, I could provide that quiet safe place. If I only had Lucas, I could allow him to make the noises he needs to and run and bounce to his heart’s content. But I wouldn’t want to even imagine life without either of my precious wonderful boys.

But this isn’t just about a car trip each afternoon. As my friend puts it – I am living in a constant combat zone.

If it’s not the car, it’s the dinner table. If it’s not the dinner table, it’s in the bathroom with gurgling and teeth cleaning noises. Or the trampoline and the joyful yelling that goes along with it, or the TV noise levels, or the volume on the iPad. We leave one combat zone (the car) each afternoon to leap straight into another one that’s equally as exhausting and demoralising. And it continues well into the sleep combat zone.

And then I’m back to my original thought: Am I jealous, angry or is it something more?

Where do I go from here?

Someone’s having a birthday!!!!

This is me on my 2nd birthday. Gotta love the 70s'!
The cute blondie on the right is my BFF *H who incidentally is STILL my best friend to this day

Yesterday my blog turned 2!

Hip Hooray!

My very first post was over on my original blog “Welcome to the Madhouse” which I later merged in to Wonderfully Wired as I felt the name change was more appropriate.  (Though there are many days that I seriously still wonder about that!)

Since then I have written just shy of 900 posts, had 11,805 comments and have had 72,679 page views.

WOW!

In that time I have shared my highs, low and everything in between online.

Some would say (and have said) that putting myself and my family ‘out there’  is a huge risk to take, but for me – I have nothing to hide so why should I?

I am the same in person that I am online and have never felt the desire to create an online personality for the sake of being ‘liked’. This is me, warts and all.

I am often outspoken and too opinionated for my own good. I get worked up easily when I am passionate about something and tend to shoot from the mouth (or fingers in this case) without knowing all the facts, and often hindsight comes up and bites me in the butt.

But I have good intentions.

I seem to have a faulty connection between my brain and mouth and forget to put the filter firmly in place before going into battle.

For me – blogging is all about creating awareness one person at a time.

I am no-one special, I am not expecting to be a world changer but I don’t want to sit back and whine about no-one understanding our life or how autism looks in my family and do nothing to remedy that.

I vowed to my boys that I would do everything in my power to teach people about autism so that they can grow up around people who have a much broader understanding of how the world looks to them.

I made the choice to not allow their diagnoses to sink me but instead used them as a springboard for catapulting me into action.

And in the process, I’ve learned a very sobering fact: That not everyone out there will understand my motives or intentions.

Not everyone will agree with my opinions and not everyone will like me.

And that’s been tough for me to have to come to grips with because I never knowingly set out to offend anyone but as it is – we are all different and we all see things in our own unique ways.

And with that said – I sincerely thank all of you who have stayed on this journey with the Wonderfully Wired family and keep the encouraging comments coming – I am spending the afternoon today catching up on replying to you all. I apologise for being so slack with this aspect of blogging but please know that I read each and every comment and cherish them all. Time truly is the culprit here. I don’t have a lot to spare and that which I do have tends to be taken up with something or another!

Good intentions remember! LOL

Have a beautiful weekend  – love yas all!

Executive functioning and visual aids.

Temple Grandin once said:

“I cannot hold one piece of information in my mind while I manipulate the next step in the sequence.”

Individuals with AS often lack the ability to use skills related to executive functioning like planning, sequencing and self-regulation.

>> Source <<

So, What is executive functioning and how does it affect those with autism? Well….in autistic individuals, it’s more of a “dysfunction” than anything else because it is something that many of them struggle with greatly.

Put simply: Executive Functioning is something that is instinctive in those with NT (neuro-typical) minds but needs to be taught and learned in children with autism.

It includes skills like planning, organisation, attention being held and the inability to see the big picture. People with an executive dysfunction tend to focus on the small or minor details and miss the rest.

As Temple Grandin said in the above quote –  She is unable to ‘plan ahead’ if she’s in the middle of a different task.

Can you see how many problems this can cause for my kids? Yep. A lot!

I often have to stop myself when I’m giving directions to them because I remember that I have given them too many instructions and that they are unable to take it all in and act on it.

Like – telling the kids to “tidy up their rooms”. That is waaaay too general and non-specific. So I have to break it down into little bite sized chunks and walk them through it step-by-step.

We are a big fan of using visuals in this house. We have them everywhere! On the fridge, above the basin, on the toilet wall, in the shower, over the bath, in the car and on their wardrobes reminding them to do the basic tasks like getting dressed. A simple picture of them getting dressed wouldn’t work, they need the sequence that the clothes need to go on.

And visuals are useless if you don’t teach your child how to use them effectively and have them teach you back so that you know that they fully understand the purpose of them.

As you can see in the above picture, all the tubs in our toy room have enlarged photographs on them of their exact contents. This makes it so much easier for the boys to tidy up. If they don’t know exactly where something goes they can look for it in the photo.

Below is a short video of Lucas and I today “tidying” up the toys and you can see how the technique has started to work but still needs a lot of work (on my part too).

Sure it’s a much longer drawn out process than if I tidied it myself, but it’s important to me that my kids learn these basic life skills so that they can take them with them into their adult lives.

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Oh , and I actually managed to post on my poor neglected ‘fun’ blog today as well. Just a silly poem about school holidays. You can read it by clicking >> HERE<<.

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Obsessed Or Overly Pro-active?

I was sitting chatting with a friend in a café catching up.

We hadn’t seen each other for a while and the conversation was moving along wonderfully. But suddenly she leaned over and said to me gently: “You know you’re kinda obsessed with autism right?”

I raised my eyebrows at her and feigned ignorance and replied: “Really? Do you think so?” While batting my eyelids at her.

“Well….yeah” she replied. “I mean, you write a blog, you have a Facebook page for the blog and all over your personal Facebook page it’s so obvious that you’re an autism Mama. You talk about it A LOT. It’s kind of an obsession for you isn’t it?”

I went home and thought long and hard about this conversation. She certainly had some valid points and I agree that it is a huge part of my life but I wondered about the word “obsession” and if it really was a fitting description. I wondered what exactly obsession means.

So I looked it up

obsession (əbˈsɛʃən)

— n 1. psychiatry a persistent idea or impulse that continually forces its way into consciousness, often associated with anxiety and mental illness

Isn’t that interesting?!

A persistent idea. An impulse that forces its way into consciousness.

Well!….. Yeah, autism IS persistent. It IS sometimes impulsive and a lot of the time it does create massive anxiety in both Harley and in me.

So does that mean that I’m “obsessed” with autism?

Well…whilst I can certainly see how it would appear that way…no, I don’t believe that I am ‘obsessed’. Extremely dedicated, interested, pro-active and keen yes, but obsessed? No.

Sure, it is a huge priority for me to continue to learn everything that I can about autism because it’s important to me to be able to provide exactly what my boys need. I want to be their safe place and their interpreter and translator. And for that to be effective…I need to know as much as I can about what I’m actually dealing with.

I’ve seen it too many times….the well meaning people who try to communicate with the boys but are clearly uneasy around them. And the boys have like a sixth sense with this stuff. They know when someone is belittling them or uncomfortable. They are really smart kids. They may not be able to read body language or facial expressions effectively but they instantly know who gets them and who doesn’t.

And this is why it’s important for me to understand as much as I can about autism and especially how it affects both of the boys differently.

So maybe I do talk about it a lot. I know that a lot of the conversations that I have with people somehow end up being about autism, but when you’re living something 24/7 and rarely get out…you can see why.

Other parents have no qualms sharing about their child’s latest academic or sporting achievement. Why can’t I proudly announce that my 5-year-old actually drank out of a straw without choking. Or boast about my 8-year-old who wrote his first legible sentence in grade 3? How about doing a happy dance because HE HAS A FRIEND! Because they are only small things for parents of typically developing children. But for me and thousands of other ASD parents….these things are huge and worth celebrating! These are things that we always assumed our kids would also do at the age appropriate times but had all but given up on them ever occurring at all after their autism diagnoses… We go on and on about these seemingly small achievements because we KNOW that they are massive leaps of progress in our worlds. It may appear to be a tad obsessive but for us – they are life-changing.

But another thing to remember is that autism isn’t exactly like having a broken leg. I mean, if you were to break your leg in a sporting incident…..it’s something that would inevitably come up a lot in conversation.

People see the plaster cast and they ask questions. They want to know all about the accident. Where did it happen? When did it happen? How did it happen? Can we sign your cast? There are Facebook status updates about it, a few cute photos and people continually ask you how you are managing now that things have changed.

But autism is a life-long diagnosis. And we mamas know that we’re in it for the long haul. Some autism Mamas don’t know that their child will actually be able to live by themselves one day, they know that one day they will no longer be here and their child will need a full-time carer because they are unable to take care of themselves. They lay awake at night worried because they just don’t know what’s in their child’s future.

Autism doesn’t simply disappear after a few uncomfortable months. And that scares a lot of people. But because we know that this is a lifetime commitment for us, we throw ourselves into being the best mother that we possibly can. Some still call that obsession and that’s ok, but when your 8-year-old son comes up and wraps his arms around your waist and hugs you tightly, you will happily wear that label.

And when he says: “ Mum, I know I’m harder work than regular kids. Thank you for taking such good care of me, I love you”…. You can handle being called just about anything in the world! Because moments like that make you realise that it’s all more than worth the tears, sleepless nights and frustrations and you throw yourself right back on the frontline with passion.

Obsessed or not. I’m not backing down.

¨ When your child is diagnosed with cancer, neighbours stop by your home bringing pre-cooked meals, hugs and support. When your child is diagnosed with Autism, families who see you in the supermarket will slip away down another aisle.”

Dr David Feinberg 2007

Confessions of a grumpy mother.

Just a little warning between friends: don’t read today’s post if you want to read something happy and upbeat…you won’t find that here.

I’m waaaay over tired and frustrated and more than a little bit peeved today. I probably shouldn’t even be anywhere near a keyboard in my current state of mind but ….meh…

Today is part 2 of Harley’s cognitive and behavioural assessment at the psych clinic at the university.  I am sitting in the waiting room feeling sick, angry and agitated. There is a little girl beside me snorting every 2 minutes while her father sits by saying nothing. If that were my kid, I’d be whipping out a tissue and telling her to blow, not allowing her to make that insidious noise.

Told you I was cranky.

It’s partly due to lack of sleep and partly due to nerves.

I’m not nervous about the results of the assessment but more the toll that it’s going to take on my already massively sleep deprived child and the crap that I am going to have to wade through to bring some semblance of peace back into the household afterwards.

Last night was an absolutely shocker. He was awake pacing the hallway and crying and intermittently screaming for HOURS on end.   At 2am I eventually stuffed an earplug in my ear and a pillow over my head in a desperate attempt to get SOME sleep but that was short-lived too.

He told me that his brain wouldn’t switch off and that nothing he tried was working. We prayed together, we did the quiet radio in the background, the soft music, the deep pressure massages, the weighted blanket, the brushing and the writing and drawing your thoughts down on paper before sleep.   Heck….I even sung to him! And all of this combined with sleeping tablets…..didn’t make a scrap of difference.

Finally I gave in and took him into my bed with me and even then he constantly reached over to check my face and see if I was asleep. Because EVERYONE loves a slap on the cheek every ten minutes…sigh….It was clear that I wasn’t going to get any sleep either. He had decided that if he was awake – I had to be awake too. That’s obviously the stupid unspoken rule here.

And of course Mr Patient was interstate…..that always adds another level to the anxiety that he experiences and of course I have a big day ahead of me today.

Anyway….once we arrived at the clinic today, I spoke to the psychologist privately before Harley went in. I told her that he had barely slept a wink last night and she replied that lack of sleep would greatly affect the results of the assessment and suggested that we postpone AGAIN! (this is the third time).

I actually laughed in her face.

Does she think I can control this? That I should have maybe done something MORE to avoid another sleepless night before an assessment like this?

Seriously?

Do people think that I exaggerate the seriousness of the sleep issues? That I am trying to extract some sort of sympathy? Because honestly – I  don’t know anyone who would wish this upon their worst enemy. I didn’t choose this life and I’m doing the absolute best that I can with what I have got. If I could fix it, I would have done so years ago. NO-ONE is that stupid.

And surely the fact that every single time we have come here – anxiety has been at play and THAT is the very thing that should be going in her notes. The teachers need to know this stuff. They need to know just how greatly changes affect this child. They need to be given some insight into just what goes on in that head of his and see that his potential is greatly masked by the crippling anxiety that engulfs him frequently.

I don’t want to give my kid more drugs, I don’t want more ‘advice’ I want the results to show that he does not cope under pressure and I want allowances made for him so that he CAN reach his full potential. Is that really too much to ask?

Besides: Isn’t that half the point of doing this assessment in the first place?

Sorry loyal readers. You got me on a grumpy day, I promise to be more upbeat and thankful tomorrow but I KNOW that there are a lot of you also throwing your hands up in the air screaming “Aaargghh…WHAT NOW”  when autism throws you another curve ball as it has done to us this week.

And if nothing else…..at least now you know that you’re not alone.  We are all in this together. Every step of the exhausting frustrating way.

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I’m ever so grateful that tomorrow is a new day with new mercies and greater expectations.    Thank God that His mercies are new every morning. Without that promise – I don’t know what I’d have to cling to.

Hope you all have a wonderful weekend. Check back here next week for the cheerier, more relaxed and less bitter Fiona X

Creating awareness on my terms…

So…..what exactly is creating awareness all about?

Is it railroading people with your beliefs because you want numbers on your side?

Is it bombarding people with a lot of random facts pertaining to your cause in the hope that they retain at least one important snippet of information only to forget the rest once the awareness campaign ends?

Or is it explaining why the cause is important to you and how it directly affects day-to-day life for you and your family on a more personal level, so that people can see real life examples that stick in their minds forever more?

Well, I guess that it all depends on where you’re coming from and what your ultimate goal for creating awareness is.

Over the past few weeks, I have read many personal accounts for and against the “light it up blue” campaign for autism awareness that is running for the entire month of April and the opinions are greatly varied.

* There is the camp of parents of children on the autistic spectrum who are in favour of the campaign and all for getting the message out there so that children like mine benefit from more knowledge and acceptance being created (which is the camp I am from).

* Then there is the camp consisting of the adult autistic community (which is varied in it’s opinion, some are for it and some are against).

* And lastly: there is the third group made up of both parents of children and adults on the spectrum who don’t agree with the campaign for various reasons but is mainly based around the allegation that Autism Speaks (the body responsible for the blue campaign) is only interested in ‘curing’ autism and only supports medicinal ‘treatments’ because they are allegedly backed by Big Pharma).

I cannot comment on another person’s choice or belief and I really don’t care to go into the semantics and politics of it all because I feel that they are irrelevant to me because I’m not trying to raise money or fund an organisation, I’m just trying to make a safer world for my kids. As far as I’m concerned: ANY effort to raise awareness and create more acceptance for kids like mine is wonderful regardless of the origins of the campaign and if I keep my focus in the right areas then I can hardly go wrong.

So with that said: let me explain where I am coming from and OUR story and why flying the autism flag is important to US.

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Firstly though, I will say that wearing blue, pinning on a blue ribbon or replacing your front porch bulb with a blue one are not effective tools for raising awareness if they’re done alone. I’m all for it and we do all of those things here, but they need to be combined with a willingness to answer questions, offer up information and a passion to explain why the cause is so important to you and what you hope to achieve by being on your soapbox.

I completely understand that some people have chosen for whatever reason to not tell their child or their other children, close friends & family that their child has autism and it’s not my place to challenge anyone on their decisions, but for us: everybody that we know well is aware that we have 2 boys on the autistic spectrum so creating awareness is just that little bit easier.

(Plus – I write a blog about our life with autism – so for me to object to people knowing about us would be ridiculous right? ) Right.

I’ve been writing this blog for almost 2 years now and in that time – my wonderfully wired email address regularly fills with emails from readers who have admitted that they now give the benefit of the doubt when they see a child misbehaving out in public without instantly assuming that it’s due to lazy or non-existent parenting. They tell me that they have changed their views because they have read and realised that things aren’t always as they first appear. Sadly – most of those commenters haven’t publicly published their comment for fear of backlash and that saddens me – I don’t want my blog to be a hostile environment where it is ‘us’ versus ‘them’.

**(I welcome ALL comments whether you live with autism or not And I will ALWAYS moderate a comment that attacks one of my readers….I promise. Everyone is entitled to their own opinion but I won’t tolerate personal attacks).

A lot of the misjudgment of autism can be traced back to the 1940′s when Dr Leo Kanner coined the term “refrigerator mother”  to describe a parent whose cold, uncaring style traumatized her child  so much that the child then retreated into autism.

And you may think that society has changed a lot since then and that there is so much more knowledge out there that this type of belief is no longer existent, but sadly – this kind of thing is still occurring today on a regular basis. Pick up any newspaper or google autism in news websites and you are sure to see stories of abuse, mistreatment and misunderstanding for autistic individuals. It’s horrible.

Autism is still greatly misunderstood. Most people’s knowledge of autism is limited to Temple Grandin, or Rainman. (Incidentally the character Dustin Hoffman portrayed was Kim Peake who actually wasn’t officially autistic , he was a savant, but I digress)…

The autistic spectrum is HUGE and no 2 individuals will ever-present in the same way. There is no one-size-fits-all description for autistic individuals and for me – THAT is an important message to get out there.

Some children seem mildly affected and some severely….Some children are non-verbal and some are hyper verbal.

Some of our kids are sensory seekers and have to climb, jump and run everywhere, they love and crave squishy hugs and body contact and some are sensory avoiders who cannot handle crowds, loud noises, a lot of action or being touched at all.

To the average Joe – you cannot tell that either of my boys have autism by simply looking at them because mine are both on the high functioning end of the spectrum. They look like everyone else but when you know what you’re looking for – it’s as obvious as daylight.

They may look typical but they are definitely not. They still need allowances made for them in the classroom, in the supermarket, in their own homes and in restaurants. Often times when  they appear to be misbehaving, they are trying to mold into what they world tells them they need to be in order to be accepted. My goal is to spread the word that autism comes in many shapes and sizes and that it is on the rise. The latest stats in America come out at 1 in every 88 children is diagnosed with an autistic spectrum disorder.

1 in 88. That.is.huge.

We can no longer sit back and allow this to be simply swept under the carpet. It needs to be addressed and awareness needs to be spread so that my kids, my friend’s kids  and the ones yet to be diagnosed can enter a world where different is NOT wrong and they are accepted for who they are. The adults on the spectrum need to be told NOT that they are crazy, attention seeking or fruit loops but given the respect that they deserve and the understanding that they long for.

My ultimate goal in creating awareness is to get the word out that autism cannot be put into a neat little box and labelled “Too Hard”. It should not be shrugged off as the latest trendy diagnosis and we need to stand up and be heard. These kids have amazing futures, they have emotions, hearts desires, passions and dreams just like the rest of us and differ only in their brain wiring. Autism is not a design fault.

See this child:

And this one:

THEY are why I am passionate about this.

And there are hundreds and thousands of other children out there wearing blue in April. Can you look into their eyes and tell me that they aren’t worth it?

I can’t. And I won’t.

April – autism awareness month. I’m not asking for monetary donations, I’m not asking for you to support any organisations, but I am asking you to look around and open your hearts and your minds and see the beauty that is autism and remember these faces in April and beyond.

That’s all I ask.

~~~

Look closely…It’s all in the eyes…

At first I really struggled to know where exactly to start this post, so late last night I sat down with a pen and paper and wrote out as many random words that came to mind in an attempt to try to figure out what was really bothering me.

I came up with: bewildered, annoyed, helpless, frightened, angry, exhausted and I kept coming back to the one word that crept up more often than the others: frustrated.

And I determined to try to find out why I kept coming back to that word.

I realised that when you’re a parent of a child on the autistic spectrum, you are thrown directly into the deep end and forced to assume the role of not only parent but also that of ‘interpreter’ and “translator’ and you take on this role often several times every single day whether you want it or not.

And most of the time I am totally ok with that, but then there are days that my inability to decipher and decode what my son’s actual crisis is about is when the words like exhaustion, angry, frightened and helpless start to creep in as well.

Last October I took the children home to visit my Mum in the school holidays, and while we were up there, we attended an 80th Birthday party for a close friend that Mum had helped organise. It was a great night and I think only a handful of people actually know what went on behind the scenes in our little world that night. I’m sure that most partygoers were blissfully unaware that my little boy was breaking his heart and clawing at himself in major distress only 2 rooms away from the festivities. Mum was helping in the kitchen and also unaware at first of the mayhem I was dealing with.

And that’s because I’ve become very skilled at removing my distressed child from the attention of onlookers in situations like that night before the brown stuff starts hitting the fans. It’s become my superpower

That night last year was triggered by one small remark that I had made offhandedly to Harley who I saw drinking his second can of soft drink. I casually said to him: “You’ll make yourself sick if you drink too much of that stuff”, and I walked over to greet someone else that had waved me over.

As I started chatting to this lady, I glanced over her shoulder and saw Harley’s face contort and his body stiffen and I knew I had to get him out of there immediately. I JUST knew. I excused myself and apologised quickly and ran the eight or so paces over to Harley and grabbed him under my arm calling out to Ella at the same time to keep on eye on Lucas. She nodded knowingly and grabbed his little hand and skipped outside with him towards the grassed area.

I love that girl.

Anyway….I got Harley outside through the fire exit and sat with him as he bent over the 2 foot brick wall flapping, screaming and crying his little eyes out. He was virtually non-verbal but I managed to figure out that the groans,grunts,screams and cries were to the tune of “You said I’m going to be sick….I don’t want to vomit, I don’t want to be sick, I’m so sorry, I’ll never drink lemonade ever again”

Oh yeah…..Did I mention that one of the traits of  individuals on the spectrum is EXTREME literalness? Well it is.

He had convinced himself that he was going to be physically sick and because he is a massive germ-o-phobe….this was totally unacceptable to him. He stresses if someone even SAYS the word vomit in his hearing so the thought that he might actually be sick himself, had done his head in. I sat there with him for what seemed like hours and I managed to get him to calm down (well, the screaming and crying stopped but the rocking and the nervous flapping hung around a lot longer) and I walked him back inside because he was begging to wash his hands.

As I waited for him outside the bathroom, I saw a friend who I grew up with and hadn’t seen for years, and we started chatting. He and his lovely wife have a beautiful daughter with PDD-NOS and I only had to say that Harley was “having a moment” for him to understand exactly.what.I.meant.

Shortly afterwards, Harley walked out of the bathroom and my friend (God bless him), took one look at my boy and gave me a hug saying: “Ok……You need to leave right now, I understand completely….it was great seeing you.”

I picked Harley up like a little infant and carried his limp sweaty body out to the car with Ella and Lucas following me. I placed Harley into the car seat but he clung to me like a baby koala refusing to let go.(This child is 8 mind you). I couldn’t stand there holding him with my back bent on that angle so I lifted him out and sat with him in the gutter. And there we sat for another half an hour rocking and the tears stopped wetting my shoulder and he eventually released his grip on me and we were able to all get into the car and drive home.

My mum told me later that my friend had said that when he looked into Harley’s eyes, it spoke volumes and that everything made total sense to him at that moment.

I’ve learned long ago that parties and Harley just don’t mix. THIS is why we regretfully decline a lot of invitations (and probably why they’ve stopped coming in anymore).

And it’s important to mention that it wasn’t just the literal comment  of mine that sent Harley spiralling downwards that night, that comment was only the trigger. I had already noticed anxiety rising in him earlier on due to the crowds, loud noises and unfamiliar surroundings. He had his headphones on but the noise wasn’t the only thing bothering him.

Look closely. Those eyes tell a lot. They are saying: "I'm nervous but I know Daddy will protect me"

Which all leads to me yesterday.

Yesterday was the Easter hat parade at my children’s school. Just those words induce horror in a lot of ASD parents and it was no different for me. When I arrived, the kids were all seated in their classes in the quadrangle with the parents and visitors all sitting and standing in a large circle around them. There were a LOT of people there and each class danced around in a circle to very loud and lively music one by one.

Harley’s class got up and from 20 metres away I saw his eyes and said to my friend: “Uh-Oh, he’s gonna blow”. I just knew. It was written all over him and though he may have looked shy or reserved or even nervous to the average Joe….I knew exactly what I was looking at. I’ve seen it many times before, it was unmistakable.

So how did I know?

I have been asked many times how I “know” when he’s about to topple over the edge from coping to a soggy mess and until yesterday I was unable to actually pinpoint exactly how I know. The answer is in the eyes. As my friend pointed out at the party, it was in the eyes. Yes, the eyes tell a LOT. It’s ALL in the eyes.

These eyes say "I'm safe and happy".

As soon as the parade was over I took Harley by the hand and walked him over to his teacher.  He stood beside me silently head butting me and yanking at my hand and I asked her to look closely at his face and body language and explained that THIS is what the lead up to a huge explosive meltdown looks like. I asked that if she ever sees this face….it would be advisable to help him escape to a quiet place as quickly as possible. I explained that it’s when his sensory system is about to blow and that it’s something that you preferably need to get to in the early stages but if not – you need to deal with it ASAP.

I walked him into the quiet vacated classroom and he sat in the corner crying, rocking and shaking. His eyes were filled with pain, with fear and they were pleading for me to fix it all for him. To make it all go away and to help him to soothe himself because he knew he was past the point of no return. He didn’t speak a word but his eyes told me all I needed to know. The rest of the day was a complete write off and ended badly with the effects on the rest of the family carrying over well into the night.  I put on my brave face and acted all nonchalant because I’ve gotten that down to a fine art now But yesterday was hell in many ways. Hours and hours of inconsolable crying and screaming will do horrible things to most people, and I for one, cried long into the night.

And this is where the word frustrated comes in.

Everyone assumes that as his mother that I always have the solution. That I can come along and save the day and that because I can read him that I can make it all better, but this is not always the case. And most of the time I wing it all anyway because what may work one time isn’t guaranteed to work the next. It’s frustrating to be able to predict most meltdowns yet not know how to deal with them.

I was so frustrated as I watched other families laughing, talking and enjoying their picnic lunches with each other, while I had to go and fetch the head of junior school to retrieve my son who had locked himself in the boys toilets crying and screaming only to run out and escape and be untraceable for the next half  hour.

I was so frustrating to have to make my youngest child miss out on his first ever book parade after activities and it was equally as frustrating to have to go over to middle school and ask my 12 year-old daughter to leave her friends and sacrifice her lunch hour to help me by watching one of her little brothers while I searched for my absconder and do massive damage control when I finally found him.

It was even more frustrating for me to see other children on the spectrum sitting quietly with their parents eating their lunch while I bravely held back the tears yet again. I wondered what they had all done that I had forgotten to do?

Why were their kids coping and mine wasn’t? What did I miss?

How come no-one else’s child lost it on such a grand scale?

I finally convinced myself that these other parents must do what I do and whip them outta sight at the first inkling of an explosion too because any other answer would have been far too tough for me to bear.

So yeah….. Frustration is the word of this week.

But next week I’m aiming for fantastic
What are you all aiming for?

On Friendship And Laughter….

Many of you know that I have been extremely guarded with friendships over the past few years and I have put somewhat of a wall up around me as protection.

Part of the reason that I built this metaphorical wall can be traced back to the early days of Harley’s diagnosis. And I added a few bricks to it after Lucas received his because I didn’t want to let anyone in because I felt that I couldn’t relate to parents of typically wired kids.

I felt like an outsider.

I believed that I had nothing in common with any of them and that I would no longer be accepted by them because my kids were different. I imagined that I was being unfairly judged as a parent all the time and  I wrongly assumed that I had been also been tagged somehow once the boys were diagnosed. I honestly thought that my days of having a “normal” conversation with other parents were over for good.

It’s important to note that this was just my perception. No-one actually said any of that to me. My low self image probably contributed to it a lot more that I care to admit!

Lately, I have taken some time to sit down and reflect and have wondered why a person like me who seems to be hurt by words so much more than the average bear would dive into something as subjective as blogging in a public forum?

It doesn’t seem to make a lot of sense does it?

But somehow I have gained inner strength and peace through pouring it all out in print.  God has been able to use my writing as a therapy tool to show me His love and acceptance of me and to help teach me areas where I need to improve. I have had my eyes opened to things that I had formed a shield against.

Like friendships with parents of “normal” kids.

Recently, I have made a wonderful new friend who totally “gets” my strange sense of humour and has one that’s just as strange herself!  We have spent literally hours laughing till we almost cried about the silliest things and we just seemed to “click” from the get go.

You know how sometimes when you meet someone new and you know that you’re just MEANT to be friends? It just works and you can’t explain it. 

Well, we have found that we have a lot in common even though both of her children are 100% neuro-typical! 

Most of our conversations are over coffee (of course) and  seem to revolve around the crazy stuff our kids have done and she has blessed me in ways that she probably doesn’t realise just by being herself.

Naturally, many of the conversations we have had  have come back to autism and how it affects our family life, but not once has she rolled her eyes, glazed over or looked bored with the topic. She asks intelligent questions, she offers up ideas and has never undermines anything that I’ve said by making light of it.

She doesn’t live it day to day like I do but she also doesn’t begrudge me getting things off my chest either. I do try hard not to monopolize the conversation and I’m starting to talk about it less and less as we discover other topics that are fun to explore!

Laughter really is so therapeutic.  I love nothing more than sitting and giggling and smiling until my cheeks and stomach literally ache. My wall is gradually being chipped into. And that’s a good thing right?

~~~

PROVERBS 17:22 
A merry heart doeth good like a medicine!

I am Mrs 79. Pleased to meet you.

I’ve been thinking a lot lately about the environmental factor in autism. Sure , we know it is only one possible theory as we already know that it’s also made up of a genetic component. And yes, I know there are certain people out there with theories that vaccinations have triggered off those children that were already genetically pre-disposed but that is an argument that I am NOT going into as this is not the direction that I want to take this post in.

So, I know that environment is only one small part but I definitely feel that it can be a big part nonetheless. Tony Attwood has said that to reach a diagnosis of aspergers, it is like ‘completing a 100-piece jigsaw puzzle. You need 80 or more pieces to complete the picture’.

 So, my boys are obviously made up of 80 or more pieces (and I believe the husband is too) . He often jokes to me that I am only one piece short of receiving a diagnosis myself.

In fact he regularly affectionately calls me ’Mrs 79′. He is referring to the obsessions that I have developed over the almost 14 years that we have been married. When we first got hitched, he took a photo of our master bedroom to show the difference between his side and mine.

His was spick and span, neat and tidy and anally perfectly organised. And then my side……clothes thrown everywhere, books piled high and balanced precariously on the bedside table, an abundance of moisturising creams and make up in the drawer that was regularly left open and shoes strewn carelessly over the floor.

You get the picture.

I deliberately misplaced couldn’t find that particular photo anywhere to put it on this post so you’ll have to take my word for it!
I was young, messy, lazy, nonplussed and regularly made fun of Mr Patient for his pedantic and obsessive ways.

I clearly remember (not knowing about ASDs back then) that he often had what I can now see were actuallymeltdowns if things didn’t go exactly as he’d imagined they would or if plans changed without his prior knowledge. For example: Before meeting me, every 1st Saturday of each month was spent on the ‘inside’ of the house cleaning, and every other Saturday was when he would do the ‘outside’ (mow the lawns etc). So you can imagine his freak-out the first time that I invited friends over for lunch on ‘Outside Saturday’  week. Or made a picnic and suggested we drive to the beach on ‘Inside Saturday’….. He struggled to say the least!

But then as the years passed, I became more and more obsessive myself. I became the mother that had all of my children’s clothes hanging on the same coloured hanger as the shirt: White shirts on white hangers, blue shirts on blue, orange shirts on orange hangers and they were all grouped together in the colours that blended.

The blue shirts were next to the green which were next to the yellow which merged seamlessly into orange etc. No-one else was allowed to touch the clothes…….including Mr Patient and I would flip out if anyone so much as looked at the wardrobes.

And when I hung clothes on the clothes line – blue clothes HAD TO be hung with TWO blue pegs. I simply wouldn’t cope if you used a red and a blue peg. *Gasp*

I had also started to turn into a neat freak wanting everything perfectly in its place and working myself to the bone to make it happen. I would screech at the children if they had more than one toy out and I was unable to leave the house in the mornings until ALL of the beds were made and the dishes were done on the off-chance that SOMEONE would come and visit. (No-one ever did). I really started to be bothered by all of this and questioned myself as I knew that this wasn’t the real me.

So I took myself off to see a psychologist fearing that I was losing it big time!

I had a lot going on; My Dad had just passed away, Harley was only recently diagnosed, I had suffered a particularly nasty case of glandular fever (mono) that almost turned into CFS and my body was in shut-down due to the 4 major surgeries it had endured in just 2 years.

My immune system wasn’t coping and my stress levels were at an all time high. The psychologist helped me to see that everything else in my life was literally spiralling out of control and I so desperately wanted to gain back some control. And the washing was one thing that I actually COULD do something about.

She gently explained that what I was doing was a form of ‘normalizing’ my life. By controlling these mundane every day things so closely I was able to take back some ground that I thought I had lost through circumstances beyond my control. Nowadays – I still LIKE my clothes to be on the right hangers but if they aren’t, I don’t lose it, I’m able to just shrug my shoulders and move on!

I have realised that it’s not the end of the world if a blue shirt goes on a red hanger and my house RARELY looks like a show home anymore. (I have three children for goodness sake!)

And yes, there is actually a point to this – stay with me, I’ll reach it eventually…..

So, back to the environmental factor in autism.

I was never a particularly obsessive person, in fact the bedroom photo story proves that point perfectly, but when stress and circumstances were combined……I did develop some very obsessive tendencies that are often associated with spectrum disorders.

So it is interesting to me now to look back and realise that environmental factors DO in fact play a large part in autism.  And the term ‘environmental factors’ does not just apply to untested chemicals, pesticides, flame retardants, detergents etc.. but things like the circumstances of our life, or the environment in which we live and also our everyday surroundings .

I wonder that if I was married to someone who was as sloppy as me and also didn’t care for routine, if things would have been different? I may not have dived into these obsessive natures that I often witnessed in my husband as HIS coping strategies and I wouldn’t be comparing my non-coping signs to those of individuals on the autistic spectrum?

I guess I’ll never know.

But my mum tells me that as a child growing up, I didn’t struggle in social situations, I made friends very easily and  I was NEVER obsessive or needed routine or structure.  I thrived with change and I know for myself that I have never felt particularly  ’different”’or had any trouble understanding body language or facial expressions.

Yet……now that I am the only NT in (what may as well be called) a house full of aspies – I have somehow been ‘moulded’  into an honorary aspie if you will. I think it’s just a case of sink or swim.

I have needed to adapt to my surroundings and I have had to choose to see things through a different lens.

I may have gradually gone from perhaps 20 pieces, to 30, then to 40 and now I may possibly be up in the 70s so I truly believe that the environmental factor HAS played quite a major part here.

It surely makes sense. I live it and breathe it. It’s all I am surrounded with. It’s something that I can never and would never WANT TO escape.

It’s all A-OK with me because 79 is a FABULOUS number after all.

Have a great weekend all.

Someone broke my baby.

There has been a huge shift around here lately. And it’s really thrown me. I’m not sure what exactly to do so I’m gonna write until I can get my head around it and try to make some sense and figure out a game plan.

Feel free to click somewhere else if you’re not interested in my ramblings. I wouldn’t blame you!

~

Oh? So some of you stayed! I’m impressed!

I’ll go back to the start of the story:

Exactly five years, 8 months and 2 weeks ago we welcomed out second little boy Lucas into the world.

He was unplanned but a really beautiful surprise. He was an incredibly good baby and an absolutely treasure. I admit that I was nervous carrying him for several reasons but mostly because I was genuinely scared to have another boy.

You see, Harley was an absolutely impossible baby with more issues than you could poke a stick at and still at almost 9 yrs old doesn’t sleep through the night.  Or cry any less, or eat any more or behave any better than when he was a toddler.

Ugh.

I remember the day clearly. I was at my 20 week ultrasound. And when the sonograper told me that I was carrying a boy, I burst into tears, NOT because I was disappointed and NOT because I didn’t want him but simply because I just didn’t think that I could possibly go through all of that drama again. The very thought of dealing with 2 completely out-of-control little boys just scared the pants off of me! (Harley was still undiagnosed at the time).

I have always said that out of the 2 boys, Lucas is the easy-going and unflappable one and Harley (although an absolute treasure and blessing himself) has been the almighty handful.

I’ve written MANY times that despite both of the boys sharing a diagnosis of Aspergers Disorder, they couldn’t be more different. Lucas has flourished and shone from very early on and Harley has struggled with extreme anxiety issues, massive sensory issues and is way more aggressive by nature.

But that has started to change lately.

These days – Harley is getting up in the mornings, making his own breakfast, eating it and getting dressed in record time. He has finally worked out that once everything is done – he has more time to do the things he enjoys before school. It’s been an absolute joy to see him so compliant and has given me hope for the future after all the years of heartache that he has provided.

And just when I started to count my chickens…. I found plenty more just waiting to hatch.

Because nowadays, Lucas has taken up the baton and has picked up where Harley left off.

We are running the same frustrating marathon that we ran with Harley at the same age and I gotta tell you – it absolutely sucks.

Lucas is now the one lying thrashing on the floor screaming, kicking and flailing his arms every morning. He is refusing to eat breakfast, making his body like a dead weight so he can’t be picked up to be dressed and hiding underneath his bed and refusing to comply with anything. Cleaning his teeth needs 2 adults . One to hold him down and prise his mouth open and the other to block their ears with their spare hand and shoulder to drown out the screaming and try to wrangle a toothbrush into the tightly clamped shut jaw.

Mornings have become quite a drama and it’s taking me almost and hour and a half to get them out of the house these days. He is crying more than I’ve ever seen him cry and is coming home in the afternoons like a bear with a sore head.

It’s like he has had a complete personality change.

I went and spoke to his lovely teacher last week and asked her if she’s noticed anything different in the classroom. And predictably she said that he is doing really well. ( I expected that *sigh*)

In fact, she said that he is on a reading level that is a lot higher than most kids his age and that he excels at reading and writing. I stood there with my mouth hanging open and was shocked to say the least since I’ve watched Harley struggle with every.single.aspect of school since day dot.

I’m not used to hearing things like that. Usually teachers tell me that “I know he’s trying but…..” or “He needs to work on….”.

So to be told that your child is excelling should feel really good right?

Well maybe if we weren’t copping the brunt of his exhaustion and frustration at home.

I think he does actually love school but it is absolutely draining him. I think that it is a case of the typical aspie habit of keeping it together at school and losing the plot in a big way once he’s safe at home again. I’ve seen this all before.

But whatever it is, I want it to stop. For his sake as well as ours. I want him to not only cope but to thrive and flourish. I’m thrilled in the progress we’ve made with  Harley but wishing that I could enjoy it more without this hanging over my head.

I’m too tired to do this all over again for God only knows how long. I feel like I’ve done my time, and I’m stamping my foot and pouting. It’s just not fair.

Lucas used to be my placid side kick. He was my take anywhere child. He was a reminder to me that I wasn’t a crappy parent and that Aspergers was more than out-of-control behaviour and aggression.

But then I sent him to school and he came home all changed.

Someone broke my baby.